Jacob's First Avastin Infusion

Jacob had his first Avastin infusion nine days ago. I’m just now getting around to writing this blog post because last week was also the kids’ Spring Break. After Jacob's infusion in Gainesville, we made our way south to St. Pete. It was a wonderful week. We went to the beach twice, visited the Lowery Park Zoo in Tampa, took in a Rays Spring Training game in Port Charlotte, shopped the outlet mall in Ellenton and were able to spend time with TD's family. Jacob went on a very successful fishing trip with the big boys, too. It was a great week for new and special memories!

March 21, 2011

Getting ready Sunday night I realized that preparing to go to Shands is getting a little easier. I’ve gotten better at knowing what to pack for Gavin and after all these years I’ve learned that no matter how long your nurses and doctors tell you your appointment is going to be, you can add a few hours and that is most likely what you will get. For this reason I took TD's dad, Mr. Dana, up on his offer to come up from St. Pete and drive us to Gainesville to help with Gavin for the day. I have a hard time accepting help, but in trying to be less selfish, I wanted to do what was best for everyone. Gavin and Brie love their Pop Pop and I was able to give all of my attention to Jacob. We were all up at 6:15 and out of the house an hour later. Listening to my iPod podcast, Pastor Bob, on the way to Gainesville is becoming a tradition. I was lucky enough to witness another beautiful sunrise on I-10, hoping again it was God showing me the way. Jacob slept in the front seat, mouth open, head bobbing as usual and Brie slept in the very back seat and had been very grumpy before going to sleep. Gavin spent the first hour asking, "Where we going?" and finally fell asleep around 8:15...thank goodness. We arrived at 9:30 with plenty of time to get Gavin and everyone awake and ready. We were in the Shands Hospital Pediatric Hematology & Oncology waiting room (long name, tiny room) several minutes before 10:00. Gavin was happy because Disney's Handy Manny was on the TV and he was having his breakfast. They took Jacob right back to be weighed and measured and then right to the infusion lab. Jacob was a little over 5'7 tall! All of our family was invited to stay with Jacob in the infusion lab, but, there being five of us, we didn't want to cause too much commotion. Mr. Dana took Brie and Gavin for a walk and Jacob was told to pick a chair he wanted to sit in. Jacob picked a nice chair in front of one of the only windows in the middle of the lab. Since this was Jacob's first time he was very anxious and wondering what was going to happen. He was worried about how he was going to feel. I explained Jacob's concerns to the nurse and she had another person come and talk to Jacob. I'm pretty sure they called her a Life Coach. I don't remember her name, but she was very pretty and had a sweet voice. She explained to Jacob how his port would be accessed and how the medicine would be given and went through the procedures with him. At this point Jacob had had the prescription lidocaine and Prilocaine cream over his port for over an hour. She said Jacob probably wouldn't feel much at all. It didn't matter what anyone said to Jacob, he was still worried about having the port accessed (and rightfully so, I cant even imagine what he thinks about all of this!). Watching Jacob trembling, I wondered how he must feel starting his 2011 Spring Break out in an infusion lab surrounded by a dozen kids all fighting for their lives. We waited a few minutes and the Life Coach returned with a book of PS3 games for Jacob to choose from. Hillary, Dr. Smith's ARNP came in and talked to Jacob and answered my questions. She informed me that they would be taking blood from Jacob, but we wouldn't have to wait this trip for the results. Before receiving the Avastin at future appointments, Jacob will have blood drawn (from his port) upon arrival and will have to wait for the results. It can take several hours, but they have to check his white blood count before giving the medicine. Jacob will also have to have a UA to check for protein in his urine. I believe this tells them how his liver is handling the drug. Hillary gave me a long list of side effects to read and she went over the most common they see in patients. The sheet I had to sign listed fatigue, headache, abdominal pain, duodenal fistula, nausea, nose bleeds and impaired wound healing. I was concerned about duodenal fistula because I had never heard of it nor did I know what it was. Hillary explained to me that the intestines and organs can stick to the outter walls of the inner body. If Jacob experiences any abdominal pain they will do an ultrasound to rule this out. She said one of their other NF2 patients has had nausea and pain with the Avastin and they did the u/s and her insides were fine. They are giving her medicine for the nausea and pain. Jacob can ask for nausea medicine (Zofran) during his treatments if he feels sick. We were told that most side effects don't occur until the second or third treatment. I am to keep a journal of any side effects Jacob has to report to them when we return and she gave me their direct lines to call if there are more serious issues. At 10:30 the nurse came to access Jacob's port. She asked us how long his lidocaine had been on and removed the Press and Seal wrap covering it (we teased Jacob a little about being covered in plastic wrap… good times!). As she cleaned the site Jacob and I were both holding our breath. She then proceeds to ask me what size needle did Jacob's port take. Really? Was I supposed to know this? She felt around and decided a 3/4 needle would be best. I held Jacob's hand and encouraged him not to look. He didn't look. And he didn't feel a thing! That was a great moment for both of us. Jacob had blood drawn painlessly for the first time in his life and he wasn't going to have to experience any pain getting an IV for medicine. Jacob's nurse started the Avastin drip at 11:48 am. This appointment they administered the medicine over a ninety minute period. The next treatment will be administered over an hour and if Jacob tolerates it well they will continue adjusting it down to a forty-five minute period for the rest of his infusions. The amount of Avastin is given at 5 ml per kl of weight… in case you were wondering. Jacob said he didn't feel the saline flush or the start of the medicine. He was too busy playing Ballers Basketball game on the PS3. Later, when the little boy next to him was done, Jacob played a WWE game. Mr. Dana brought Jacob a double baconator cheeseburger and french fries. He ate while getting his infusion! Little things like not having to make Jacob fast before infusions are going to make this next year so much better than the alternative. Everyone in the lab had lunch. They had several pizzas brought in and offered slices to everyone there. Brie and Gavin ate with us and the time seemed to passed fairly fast. The machine that Jacob's Avastin bag hung on went off at 1:15. The nurse then hung a bag of saline to ensure all of the Avastin in the line was pushed through. Jacob was done around 2:00. He did not like the way it felt when the nurse removed the needle accessing the port. It seemed quick to me and she looked like she was being gentle, but Jacob said it hurt. We will ask next time for her to hold the port down at the same time she pulls the needle out. Jacob was done and we were on our way to enjoy our week in St. Pete. During the ride down I reflected on the day… I wondered how many children had been in the infusion lab this week. I looked up statistics when I got home and found that in the United States in 2007, approximately 10,400 children under age 15 were diagnosed with cancer and about 1,545 children will die from the disease. Cancer is the leading cause of death by disease among U.S. children ages 1 to 14 years and cancer is still relatively rare in this age group. On average, 1 to 2 children develop the disease each year for every 10,000 children in the US. This is just kids with cancer. This doesn't count Tuberous Sclerosis or NF2 or any of the other many horrible things children suffer from. It's so heartbreaking. It is also heartbreaking that I almost felt comfortable in the infusion lab. I wasn't uncomfortable and I wasn't scared. Both very strong feelings I have suffered in the past. Jacob and I had been in the infusion lab at the medical plaza many times in the past to have his IVs placed for MRI contrast. The infusion lab nurses are a lot better at getting IVs in little veins than the doctors and nurses in MRI. I can remember looking around and feeling sick seeing those children suffering and also feeling very thankful that my child didn't have to go through chemotherapy. It was always one of those moments where I could actually feel thankful (or least less frustrated), knowing things could be so much worse for Jacob than they are. We have spent so much time over the years sitting in MRIs, hospital surgical waiting rooms and multiple clinics and I have always carried the thought that I can't believe this is happening to my son. I spent so much time thinking that he shouldn't be going through this and wasting time being mad at God. When I watched the mom across the lab from me with her two children, or when I talked to the mom next to us, for once I didn't see her any different than me and I understood how she must be feeling. I still feel sympathetic for the sick children and their families. It is still difficult to accept, but it has gotten a little easier to swallow.  I am understanding better that suffering is a part of life.  I'm not sure if time is making me numb or if God is giving me the peace I have prayed for… to be the best I can for Jacob. I had certain dreams for Jacob. It has taken me a long time to dream new dreams for him and let go of how I thought Jacob's life should be. Jacob is the best teacher for that. He was incredibly brave getting his first infusion. He didn't complain. He and I both have great hope that this step in his treatment is going to be a positive one. It will not be something to be sad about.

After the infusion, Jacob was told he could pick an item (I wanted to write “toy” but Jacob is getting so big, and a lot of the items were not toys) from the treasure chest. Jacob was Jacob, picking a stuffed teddy bear out for Gavin. Always thinking of others. We were told that the infusion lab appreciates donations to the treasure chest, especially for items for the older children (teenagers). It’s now on my “To Do” list! Over the next few hours and into Monday evening, Jacob suffered a headache and was tired. I gave him Tylenol. Hillary informed me not to give Jacob Motrin or Advil while he is on the Avastin. Over the next few days Jacob had a few more headaches and complained about being tired. On Sunday, a week after the infusion Jacob suffered stomach cramps, but it is hard to say weather it is from the medicine or not. I wrote it in Jacob's journal. Jacob's next infusion is April 6 and he will also have an EEG that day.

Thank you Mr. Dana for helping make Jacob's first infusion a little less stressful!

Thank you to all our family and friends, for your continued prayers and support.

If you would like to leave Jacob a note or sign his guestbook please visit:

http://www.caringbridge.org/visit/jacobwgrimes

Port being accessed



Hives Are Horrible!!!

Photos of Gavin's Hives. 

I took so many pictures, because I wanted to show our doctor.

If this were a multiple choice question, the answer would be “All of the above.’ Hives are miserable, awful, heart-breaking and cruel. It was a terrible experience, made even worse by the fact that there are no answers. Were they from a drug allergy? Was it a food that caused them? Could it have been something in our environment? Maybe the hives were from an illness or a virus? At this point, we may never know, especially given the doctor’s “solution” to finding the cause… but we’ll get into that later.


It all started several weeks ago on Thursday, January 27th. Gavin woke up with a very snotty nose and some congestion. We dealt with it in the normal manor - bulb syringe, Vick's and steam showers. Gavin’s cold seemed to be lingering on and on over the next few weeks, but he didn't have any other symptoms of illness and the drainage was clear.

Thursday, February 17, Jacob had a 24 hour bug and came home from school sick and throwing up with a low grade fever. The next day, TD seemed to have come down with something similar to what Jacob had the day before. He was suffering from body aches and vomited once. Brie was coughing and didn't feel great either. That Friday night, the 18th, Gavin had a low grade fever. His “little cold” was going on for three weeks at this point, but he was cutting all four of his two-year molars and we thought that it was mostly attributable to the teeth. I assumed the fever was from the cold, molars or maybe the virus Jacob brought home. Gavin started coughing that Saturday, and on Sunday afternoon woke up from his nap complaining that his ears hurt. I took him to CHP's Urgent Care and saw a doctor there. The urgent care doctor informed us that Gavin had an ear infection in both ears, but it was mild. The doctor said even though Gavin was coughing, his lungs sounded clear. He prescribed amoxicillion, 7 ml, twice a day for the next ten days, and Motrin for the pain. Over the next few days, Gavin's cough seemed to clear up some, but he remained very grumpy and wasn't sleeping well. The weekend was here again and we had a quiet Saturday and Sunday. TD and I still felt like Gavin must be having a hard time cutting of his two year molars and that was why he wasn't himself. On Sunday night, February 27th Gavin had a 100.6 fever. Again, I blamed the teething. He had been on amoxicillin for seven days, so there was no way he was still reacting to an illness. It was a terrible night. Gavin got up every hour crying and trying to get comfortable. I gave him some Motrin around 4:30 am so he and I could both get some rest. The next day was going to be a big day for all of us.

Our family got up that Monday morning, February 28th, and headed to Shands for Jacob's port placement surgery. Gavin felt a little warm, but slept most of the way to Gainesville. I was thinking the entire time, "Why does teething have to be so painful?" Gavin ate his breakfast, had some trail mix, drank his juice and we gave him his amoxicillin and Motrin (for teething pain) around 11:00 am. By 1:45 pm that afternoon he had a rash starting on his elbows and knees. TD and I were baffled at what it was from. After talking to Gavin's doctor in Tallahassee, we took Gavin to the urgent care in the same building as the surgical center Jacob was having his surgery in. By the time we got Gavin into a room to see a doctor at the walk in ER (our wait wasn't very long) the rash was looking more like hives and had spread to his legs and feet. It was extremely upsetting. Not only was my little two year old in the ER two hours away from home with an unknown rash, but my precious fourteen year old was in surgery! The nurse and doctor were very nice and said the hives were either from a food allergy, an allergic reaction to something he touched or to the amoxicillin. I thought, "Really? Thanks for clearing that up for us!" The ER doctor also looked at Gavin's ears and said his ear infections were still very bad, that they had obviously gotten worse since the “mild” verdict from the urgent care doc. She also said to stop the amoxicillin immediately. Gavin was prescribed Benadryl, Zithromax and a steroid if needed. I went to bed Monday night exhausted from traveling, worrying and doing my best to take care of my boys. (Thank you Brie for being (mostly) well at this time!! Brie had tested positive for flu the weekend before, had been miserable, but was getting better.)

Gavin was up and down all Monday night and woke up at 5:30 am Tuesday morning shaking, crying in pain with full blown hives on most of his body and a fever of 99.7. He was still congested. TD called into work to make sure Brie got to school and Jacob was well taken care of while I took Gavin to see our family doctor here in Tallahassee. I needed to find out what she thought was going on and what was the best plan of attack with all of this medicine. Even though I had given Gavin Motrin, his fever had still gone up a bit to 100.8 by 7:45 am. I called Dr. Kelch's office as soon as they opened at 8:00 am and had Gavin there by 8:30 am. Gavin was crying, screaming "Ow" over and over and wouldn't walk. He didn't want to be touched or moved. It was scary and heart-breaking all at the same time.

Dr. Kelch said she couldn't be positive what was causing the hives. She said, as of that morning, the breakout didn't look like an amoxicillin reaction, but because he was taking it when he broke out, it was definitely a maybe. She said it could be food, but that food-borne reactions usually get better within the first 24 hours. And Gavin was getting worse. She said she thought it was probably hives brought on from a reaction to an illness, like a virus or the flu. She did have the nurses prick his toe to get a sample of blood to check to see if his white blood count was elevated. Dr. Kelch said his lungs didn't sound great and if his white blood count was up he would need to go for an x ray to rule out pneumonia. She did find that his ears didn't look too bad, a difference in opinion from the other doctor the day before. She said she could see the fluid build-up, but overall she thought they were healing. Gavin's white blood count came back normal so we were sent home to wait it out. So I left our doctors with a schedule for Prednisone, Benadryl, Zithromax and the ok to give Motrin and or Tylenol with them. And a helpless feeling. And a notepad to track the madness. We still had no idea what was causing the horrible hives.

Wednesday morning came and Gavin was still covered in hives. And much more miserable than the previous day. By that afternoon he hadn't walked in almost 48 hours. After a Benadryl and Motrin cocktail, we made him get out of bed and walk around. It was heart-breaking. He looked like he was learning to walk all over again. With every slow step he cried and shook. We held his hands and cheered him on. Jacob and I took him outside and encourage him to move around. Holding Jacob's hand, Gavin crossed the yard and stopped and picked a flower. His little field trip lasted about 30 minutes and Gavin was crying to go back inside to lay down. The hives had spread to his face.

Another night of crying, 4:00 am oatmeal baths, tossing and turning passed. I was exhausted and emotionally sick over what Gavin was going through. He was on day four of hives, pain and congestion, with no signs of getting better. His hives had left horrible bruising and the hives that had moved to his face were swelling up his eyes. That night, before bed, his eyes looked like they could have swelled shut and were matting a bit. The only thing that relieved the itching for a few minutes was covering Gavin from head to toe in calamine lotion. That morning I called Dr. Kelch's office in tears and insisted on them seeing Gavin again. My laptop loaded with multiple photos of Gavin's hives from the previous days, I took Gavin back to the doctor. It was the third trip that week. Dr. Kelch looked very disappointed that Gavin was still so sick. She viewed all the photos I had on my laptop and said that some of the hives in the pictures did look like a penicillin allergic reaction, but she said Gavin's fever didn't make sense. His temperature Thursday morning was 102.5, and that was after his morning dose of Tylenol. (We stopped the Motrin and switched to Tylenol that day in case it was an allergic reaction to the Motrin. At this point, I would’ve tried anything, and I was thinking that he was allergic to EVERYTHING). She looked at Gavin and did a flu swab. She said the results would be back in a few days. She also added Claritin to the list of drugs Gavin was taking. Evidently, up to five antihistamines can be taken at once. I prayed it wasn't going to come to that. Dr. Kelch, still puzzled with what was causing Gavin's hives and still believing they were from an illness, sent Gavin to the lab have blood drawn.

I took Gavin to the Lab Corp on Tim Gamble first and they were slammed packed as usual. After signing in and sitting for a brief time with Gavin crying and about to burst into tears myself, I asked the attendant at the window how long the wait was going to be. She said a long time. She said there were six people in front of us just to have their paper work done, not counting all the people who were waiting that were already checked in. Gavin had been madly itching since the dose of Prednisone I had given him when we left the doctors office and was covered head to toe with glowing red, huge and horrible hives. You would of thought the lab techs would have made an exception and taken Gavin right back. This situation reminded me of one of my daily devotions I had read this year. It is about finding your joy. One way to feel true joy is to give something away each day, not talking about material things. A few examples are giving encouragement, an extra pair of hands, your seat, forgiveness, and giving a sick baby your place at the blood lab!! I will remember what a difference this could have made for us at the time. Unable to hold back my tears any longer, I asked her, crying, if there was another lab I could take him to. She said our HMO had their own Lab Corp at it's urgent care facility. This was good news. CHP Urgent Care was very close by and I had been to their lab once before. I sure wish I had known you could go there for simple blood work. I thought it was a speciality lab. Turns out it isn’t, so we went there. The attendant was very nice, but she made me take Gavin across the hall to have him weighed. With young children, there are rules based on their weight as to how much blood can be taken at once. Dr. Kelch had ordered a parvo (Fifths disease) test, mono, white blood count, cbc, and a blood culture.Getting Gavin's weight was a pain because Gavin was screaming, itching and crying. The doctor who had prescribed Gavin the amoxicillin almost two weeks before let me back into the clinic, watched me weigh Gavin and then held the door for us to leave. He didn't say a word and I wondered if he even recognized us. Even though Gavin wasn't next in line they took Gavin right back. This is how it should have been and I was very grateful. Sitting in the chair was horrible. I tried holding Gavin still, but he is so strong and determined. The tech was able to get one vile of blood drawn and because Gavin moved too much she "blew" his vein and had to tape that arm up. I was so happy to see TD come in. As happy as I could be at that moment. I could see his heart breaking looking at Gavin and me. What totals wrecks we were at that point. The first tech got another tech and TD and I recognized him from the Lab Corp right next to our house that had closed. We knew he was good at his job. I'm sure that is why she went and got him. TD sat in the chair and held Gavin for the second blood draw, from Gavin's hand. They took five tubes of blood. I was very relieved our trip to the blood lab was over and we could go home. TD had brought the Claritin I asked for and I gave it to Gavin. We went home and Gavin took a good nap. The Claritin seemed to help some.

Friday we continued the Benadryl every four hours, Prednisone in the morning and Claritin once in the morning and once at night. Tylenol for pain and fever and Friday was Gavin's last does of Zithromax. This is entirely too much medicine to have to give a little one.

Gavin looked a bit better on Friday. He seemed to be feeling a bit better too. He was still red and itching, but his fever was gone. Gavin's legs and hands looked better and the swelling had gone down some. His face was still broken out, but not as swollen. I talked to Anna at Dr. Kelch's office and she said Gavin's white blood count came back slightly elevated and he was negative for mono. She said the other blood tests would be back the following week. I told her that Gavin was feeling a bit better, moving around and eating some. We talked about the fact that it usually takes five to seven days for penicillin to leave the body after the last dose. Gavin was almost on day five since his last dose and he was getting better. I say getting better lightly. He was moving and his attitude and demeanor were returning. He looked better to us, but anyone who hadn’t seen him probably wouldn’t have said, “He looks great!” At that point, anything would’ve been better than the past days.

Saturday was another good day of healing.

Sunday was a very good day. Our baby was coming back! Gavin had been fever-free since Thursday night and the hives were now red blotches. He played outside and ate well. We cut back on all the medicines and only gave him one dose of Benadryl and Claritin.

Monday I spoke with Anna and gave her the good news. Gavin was getting better and better a little each day! She informed me that Gavin was negative for parvo (Fifths disease), flu, mono and his blood culture had grown normal. With these results, it was appearing like penicillin very well could have been the culprit. “The “solution” to determining whether or not Gavin is allergic to penicillin is simple: The next time we give him amoxicillin for an infection, if he breaks out in hives, penicillin is the allergen.” A laughable remark, but apparently, the only way we will know for sure is to give it to him again. I learned that allergies can take several exposures to present themselves, but once they do come out they always come out. Gavin has had amoxicillin once before in October of last year with no reaction. TD and I talked about what we will do in the future and we decided that we will ask for the alternative to penicillin and until Gavin is older we will assume he is extremely allergic to penicillin. We don't want him to ever go through another reaction like he had just experienced.

What else I learned:

Allergies to egg, milk, soy, wheat, peanuts and tree nuts represent 90% of all food allergies in children.

Penicillin allergy is one of the most common drug allergies.

I also learned there is a difference between peanuts and tree nuts. Nuts in the tree nut family are almonds, Brazil nuts, cashews, chestnuts, filbert/hazelnut, macadamia nuts, pecans, pine nuts, pistachios and walnuts. It makes sense, but I had just not thought about it before. We researched it because Gavin had cashews and almonds for the first time on the day his hives started. Also, persons with tree nut allergies are known to have coconut allergies.

An allergy is an overreaction of the immune system. The body's immune system treats the substance (called an allergen) as an invader and reacts inappropriately, resulting in symptoms that can be anywhere from annoying to possibly harmful to the person. In an attempt to protect the body, the immune system of the allergic person produces antibodies called immunoglobulin E (IgE). Those antibodies then cause mast cells and basophils (allergy cells in the body) to release chemicals, including histamine, into the bloodstream to defend against the allergen "invader." It's the release of these chemicals that causes allergic reactions, affecting a person's eyes, nose, throat, lungs, skin, or gastrointestinal tract as the body attempts to rid itself of the invading allergen. Future exposure to that same allergen (things like nuts or pollen that you can be allergic to) will trigger this allergic response again. This means every time the person eats that particular food or is exposed to that particular allergen, he or she will have an allergic reaction.

I learned that Gavin's great grandfather is allergic to penicillin, but TD and his dad are not. The tendency to develop allergies is often hereditary. However, just because a parent or one of your children might have allergies doesn't mean that all of your kids will definitely get them, too. And someone usually doesn't inherit a particular allergy, just the likelihood of having allergies.

I hope to never see a case of hives again!!!

I want to be like my big bro!!

I hope Jacob will teach Gavin how to play basketball when he gets older because TD and I are all about baseball and football and sister plays soccer and does dance (all of which are just excuses for us being TERRIBLE at basketball!).


How cute is G?



What's in our Neighborhood?

One of Gavin's favorite things to do is to go on walks around the neighborhood (which is also one of his new words!). He loves to push his Build-A-Bear stroller with either Whitey, his camo Small Fry bear, or Charlie, his Portuguese water dog. Gavin also likes to pack his juice cup and a snack in his stroller (along with some miscellaneous items that change each trip like a ball or his bible) and make pit stops along the way. We count tires on cars (thanks to Gramma and Pop!), flowers and trees, birds, etc.


Gavin and I thought it would be fun to take photos of a few things that we love in our neighborhood.


Just sharing........

What's up, Brie?

If you ask Brie this question, she would reply, "Nothing."  Her answer, however, would be very far from the truth.  Brie has a ton of really cool things going on and I wanted to take a few minutes to write about them.

It's really hard for me to believe that my baby for eleven years (prior to this crazy child named Gavin) is about to turn thirteen.  She's changing so much every day and keeping busy with school, art, dance and Facebook.

Brie is still in the Math and Science Magnet Program at Cobb Middle School.  She successfully made a B in her high school credit Spanish I class (Brie is in 7th grade) last semester and was on the honor roll.  I am extremely proud of her for making 295 points out of 300 on her Bibliography and Monologue project in Language Arts.  Brie chose to do Gabrielle "Coco" Chanel.  She designed her presentation board in the shape of a Chanel No. 5 perfume bottle, sported a Chanel handbag, earrings and dressed in a "little black dress" for her monologue.  Brie is so creative.  I hope that she will go on to become a fashion designer or do something she loves in the fashion world. 

Or maybe she'll be an artist.  Her latest pieces are fantastic!  I told you about her apple that was put on display at our local fairgrounds in the fall.  Since then, she's painted a Santa for a Christmas present for her Gramma Gina, a beautiful toucan for her GG as a birthday gift, a funky heart for me for my birthday, and a unique tree for her dad.  I can't wait to see what she'll start on next. We got the 5x7 canvas she requested, so it'll be little whatever it is!  Good things come in small packages...  Brie's tree was put on Brush and Palette's (her art studio) Facebook page this past week.  I guess her teacher, Pam, loved it as much as I did.  Whenever I see her painting I just want to scream, "WOW!"  They are so impressive and she hasn't even been painting a year!

Brie is super smart, but, being born left-handed, I truly believe she is genetically meant to dance, to do art, and to be driven by her emotions.  After dancing from the ages three to nine, Brie wanted to try something different and went on to play soccer for three years.  I worried about letting her quit dance, but I let her because I wanted her to be happy with whatever activity she was doing.  I ended up really loving to watch her play soccer and it was something for our entire family to do together.  I have very fond memories of walking the track around the soccer field extremely pregnant with Gavin and later taking Gavin to see his big sister play when he was only a few days old.  I can remember her first goal and being proud that she was such a great defender.  I loved being able to watch her play soccer and watch Jacob and TD throw the football at the same time.  Even though I loved Brie playing soccer I was super excited when she asked to go back to dance.  We found a new studio, closer to our house, a new environment, and checked out the classes.  Brie wanted to do hip hop and I wanted her to do ballet.  We compromised with jazz.  Her first recital with her new studio, new teacher and new classmates is only a few months away and I am so excited at the thought of sitting in the audience and watching my beautiful ballerina dance.  It has been way too long. 

Speaking of too long...  It had been too long since Brie and I had spent any time together, just the two of us.  Last weekend, Brie and I got pedicures, ate dessert at The Melting Pot and saw a movie.  It was a lot of fun.  Brie and I laughed at the new massage chairs at the nail salon.   Did you know the massage chairs now have butt massagers?  It was hilarious to be in the middle of talking about something and watch Brie being lifted up a foot off the chair.  She was laughing at me too.  She picked a red glitter nail color and I chose a cherry red.  Brie is always unpredictable.  The Melting Pot was delicious as always.  We picked the smores chocolate and Brie's favorite thing was to dip was the bananas.  It was hard to pick a movie that we both wanted to see.  Brie was pushing for a scary thriller and I was hoping for a comedy or a mild thriller.  I do not like scary movies at all and do not think being scared is fun in any way, shape or form.  I am Number Four was a compromise until TD told us how much Jacob wanted to see it.  We ended up going to the new Adam Sandler movie, Just Go with It.  While watching it, I thought how PG-13 perverted it was, but how very hysterical!  During a very adult funny moment I looked over at Brie and she was laughing too.  She got the joke and I realized how big she has gotten.  It seems like yesterday we were watching Toy Story and Bugs Life.  We ate popcorn and drank coke.  It was a wonderful evening for me.  I'm not sure how cool Brie thinks I am anymore, but I love spending time with her no matter what we're doing and I was very thankful for these few precious hours of just her and I.

Below are a few recent photos of Brie and her art work.

Brie,
I love you, baby!
I'm a proud mama!!

                      Brie's Apple Painting is the colorful one at the bottom, November 2010

Santa, December 2010

Valentine's Heart, February 2011

 Tree, March 2011

                                                            Toucan, January 2011

Jacob gets his port!

Monday, February 28, 2011

Shands Children's Surgical Center at the Ayers Medical Center for Jacob's port placement surgery (what a mouthful!)

After being up with a feverish Gavin coping with what I thought was molar teething pain every hour until 4:30 am, getting up at 6:50 am was brutal on Gavin and me.  We had planned to get up an hour earlier but that just didn't happen.  Jacob wasn't scheduled to go to pre-op until 11:00 am, but the nurse said we could bring Jacob early and that he may be able to get started early.  I had really hoped this was possible because Jacob couldn't eat or drink anything, but I knew it was unlikely.  Regardless, TD, Jacob, Brie, Gavin and me left our house at 7:40 am.  Everyone was grumpy.  After glancing at Facebook  and listening to the kid's conversation it wasn't hard to guess that they both had stayed up way too late playing on their iPods and phones and probably watching TV at the same time.  We weren't even all the way to I-10 before all three kids were back asleep.  I wished I was sleeping too, but for some reason I have a hard time sleeping in the car.  Half way to Gainesville beautiful Mr. Sun poked his head through the clouds and woke up Gavin.  I tried to hang a shade, but Gavin insisted on pulling it down.  I knew he would fall back asleep once we changed directions and were on I-75.

Did you know that Customs and Border Patrol has a workforce of over 61,350 employees, including officers and agents, agriculture specialists, aircraft pilots, trade specialists, mission support staff, and canine enforcement officers and agents?  Did you also know that their officers screen passengers and cargo at over 300 ports of entry? I didn't.  TD and I were really surprised to see one Border Patrol SUV sitting on I-10 right before the I-75 S ramp and then even more surprised to see two others on I-75 when we merged off the ramp.  They were a long way from Miami and even further away from the Mexican and Canadian borders.  Coming up with theories of why they were in Lake City, FL became an interesting conversation for the next several miles.

We made it to Gainesville around 9:50 am and easily found the surgical center.  It wasn't as I envisioned it.  I think I had pictured it to look like Miami Children's  Hospital for some reason and it didn't at all. It was a long and skinny building and the Children's Surgical Center didn't take up much of it.  There was also a walk-in urgent care clinic in the building, called Solantic, which came in handy later in the day. I left the family in the van because all the little ones were still sleeping and went inside to check Jacob in for his surgery.  The receptionist was very nice.  I had many papers to fill out and information to confirm and when I was done she gave me a buzzer.  Very similar to a restaurant light up, vibrating buzzer. She informed me that Jacob was the last case because he was the oldest, that he was scheduled still to go to pre-op at 11:00 and his operation was blocked out for 80 mins, which included prep time.  When I got back to the van, Gavin was awake and I got him dressed, woke up the big kids, TD packed the stroller and we were ready to move on to the next step of our day.  Our circus set up camp in the outside lobby.  The surgical center waiting room was very cute, but very tiny.  It had a beautiful fish tank and a big wall-mounted tv playing Disney channel with some post-like, kid-friendly seats in front of it.  Most of the seats were taken so we chose to sit in the waiting room outside the waiting room.  As usual, our iPods came in handy.  The pre-op nurse called Jacob back right at 11:00 am.  She did an intake on him and then an anesthesia doctor came in and asked us a million questions and put in Jacob's IV.  I was so thankful she got the IV in on the first try!  I'm pretty sure Jacob was thankful too.  This will be the last IV Jacob has to get for a very long time.  Jacob changed into his fashionable surgery gown and posted up in his bed to play the PS3 attached to his cubby's wall.  Jacob's dad arrived around noon and came back and played football with Jacob. At that time we were informed that it would be at least another hour before Jacob would go to surgery so everyone took turns visiting Jacob.  Jacob's dad, his Grandma Gayle (GG), Brie, TD and even Gavin went into pre-op and wished Jacob well on getting his port.  Jacob was nervous before he got his IV and I asked for some medicine (Verset) to calm him, but by the time they brought it Jacob wasn't worried that much any more and declined it.  Finally at 1:20 pm the surgical nurse and the anesthesiologist came to take Jacob to the OR.  I reminded the doctor to please hide the instruments before Jacob goes into the room to try and spare him some fear he has suffered in the past (but according to Jacob they did not hide them very well). The nurse said the surgery could take anywhere from 30 minutes to 3 hours.  We decided to take Gavin for a walk outside.  It was a beautiful day.  When I was putting Gavin in the jogger I noticed his left elbow was a bit red and had a bump or two on it.  I thought that maybe he had fallen or bumped it when I was in the back with Jacob.  We went for a walk and about 20 mins later Gavin fell asleep.  We went back inside to relax and let Gavin take a nap.  I went to adjust Gavin in the stroller and I noticed that the bumps looked more like a rash and were on both elbows and on his knees and ankles.  I had no idea what it could be from.  I called our primary doctor in Tallahassee and asked them what they thought we should do and they suggested taking Gavin to the ER.  So we did, at which point I became a nervous wreck.  I had sent one son to the OR and was at the ER with my other son.  What a mess.  My nerves were shot and I felt like I could throw up at any moment.  I was very thankful that Brie was mostly better from her flu and I gave her strict orders to call me if Jacob's buzzer went off.  It didn't.  The nurses at Solantic were very nice and compassionate to our situation.  Gavin was still asleep in the jogger and they took us right back and put us in a room.  The nurse asked us questions and Gavin's intake was very simple since he is only 22 months and hasn't really been sick in his short little life time.  The doctor came in and woke Gavin up to look at him.  She informed us that Gavin was suffering from an allergic reaction to a food or something he came in contact with or from the Amoxicillion Gavin had been on for his ear infections.  I said a little prayer at that moment thanking God that it wasn't mumps or measles.  She looked at his ears and said they were still very infected and she prescribed Zithromax for the ear infection and prednisone for the break out if it got worse. She said we needed to give Gavin Benadryl every six hours until the rash was gone.  I went to the pharmacy while TD checked out at the urgent care clinic and I left the Benadryl with Brie.  It had been two hours since Jacob had gone to the ER so I was needing an update.  When I went back the recovery nurse had me sit and wait for Jacob and went over his release and care instructions.  She said Jacob was still in phase I recovery and doing very well, snoring away.  I went back out to the waiting room to relay the good news to our family and went back to the recovery chair to wait for Jacob.  Jacob's nurse brought out a port just like the one Jacob is now a proud owner of and showed me how it works.  I was very impressed.  Jacob was wheeled in still asleep and we all worked on waking him up. He had to leave his comfortable bed and move into a recovery recliner.  He tried to go right back to sleep but his dad and I kept talking to him and finally he woke up enough to drink some Gatorade and eat some sherbet.  Jacob said he was in a lot of pain so I left Jacob to have his pain meds filled and his GG fed him his orange dessert and his dad got him dressed.  At this point it was 5:00 pm and Jacob was being encouraged to head home.  TD packed the family up and our plethora of stuff in the van and pulled up to the building to pick up Jacob.  Jacob was wheeled out and transplanted into the van and we were on our way back to Tallahassee.  There's no telling how many bags of fluid Jacob was given so he was about to burst by the time we made it to I-10 and we stopped at the rest area when we changed interstates.  I bet it was a pitiful sight to watch me walk Jacob to the family restrooms, but we survived and I didn't drop Jacob.  Jacob was in great spirits on the way home and played his iPod.  Gavin was not in a good mood and fussed the last hour home.   Miserable.  Jacob's dinner request was a triple bacon cheese burger, fries, frosty and a coke.  He pounded it like Joey Chestnut (the #1 ranked professional eater for those of you not in the loop!). Jacob made himself comfortable in the rocker in our living room and we all did our best to relax.  A little over an hour later TD got Jacob his pain medicine and got him comfortable and ready for bed.  They sat and watched some kind of antique seek and rescue show and talked until Jacob feel asleep around midnight.  I was so very thankful February 28th was over and Jacob's surgery had went so well and we were one step closer to getting him on the Avastin.

Jacob had a good night and slept almost the whole way through.  I set my alarm to give him his pain meds at 1:00 am and he didn't want to wake up.  I went in to check on him and offer him pain relief at 2 am, 3 am and finally at 5 am we woke Jacob up and made him take the percocet so he wouldn't wake up later in terrible pain.  He took it and went back to sleep.

A new day had started with a whole new set of challenges. 


                                       This is a photo of a port and catheter like Jacob received.